Crohns is back and fighting, but so am I…

Hi all,

So sorry for the dramatic last post and then lack of follow up – to say that this Easter has been hectic for me is an understatement! I have had the hospital filled first week, and then since then I have had to complete three 2000 word essays, my dissertation and prepare for two exams – all of which happen within 3 weeks of each other. Stressed doesn’t even cover it!

Writing this quickly just as an update, before packing up and heading back to university for the final push! Cant believe I have nearly finished, so much has changed…but that’s a post for another day!

With regards to my crohns the colonoscopy was grim (aren’t they always?!) and they confirmed that there is ulceration indicating that Crohns is back, which is very disappointing; but luckily it isn’t as bad as was expected, it currently isn’t too aggressive – which is something positive! I have only upped my current medication by 25mg a day, which isn’t even an extra tablet, so so far it is all under control. As it stands now though, I haven’t been told to d anything really, just to wait..just to see what happens and THAT my friends is a little terrifying. Now as if I don’t have enough on my plate, I was told to meet my specialist when I get back to university to discuss future treatments and the future in general – but to do this my private health care has to approve the meeting, and they wont do so at the moment because I fear I have reached my maximum usage. They need to review my case files and assess how much, if any, more support thye can provide. This is SUPER stressful, it not only requires so much more of my time to fill in forms and chase secretaries to follow up to allow this assessment to take place, it also means that there is the chance they will not approve for me to go back – just cut me off as it were. My parents have said they will pay for me to have one last meeting with my consultant to arrange a future health plan if thi s occurs, but I like my doctor and want to stay with someone I have finally found who I trust and like – ARGH!

But, I have to remember how much I did with my crohns – and that was when I was really, really ill. I went to Rome, I excavated an archeological site for three weeks, I travelled to Naples and Pompeii. I climbed Mount Vesuvious – actually did this during a flare and was nearly crying at the top- but I did it. I climbed it. I conquered it!  This is what I need to remember, I was a lot more ill last time, and I still managed to achieve so much. now I know what is happening, I know what I am fighting and I have help and support from the start – I am stronger and wise and better, which means I can achieve even more than last time – right? It means I shouldn’t let it get me down and should just keep fighting for what I want to do in life, and Crohns can come along for the ride if it wants, but it is NOT in charge.

Sometimes a cheesy self -motivation speech is just what you need.

Chins up,

H xx

Up, Up and Awaaaaaaaaaaay :)

so excited

This is me right now 😀
(Actually that’s a right now is sat in leggings, a baggy top and a hoody in my room at my desk, procrastinating doing one of the many essays piling up infront of me…but you know what I mean 😛 )

I am having such a good, CROHNS FREE time at the moment, and I just cant get enough of it! I have been on my easter holidays back at home for about 10 days now (time flies!!) and have been having such a nice time 🙂 I have been working quite a lot on university work, which isn’t fun; but balancing out with plenty of other activities! I have been working quite a lot for my mum and auntie – who own their own business – because my mum hasn’t been well recently; and although the extra shifts were unplanned for and therefore impeding on my uni work time, they have given me the perfect opportunity to earn that little bit extra money, just what I needed! Aside from that I have been seeing a lot of my friends, we played some tennis and badminton, chatting, a cheeky McDonalds McFlurry run here and there!
This weekend I went into London with a few friends and we went on the Shoreditch pub crawl – which was hilarious and such a nice fun night out 🙂 We then stayed at his flat in London – which was gorrrrgeous! Although I ended up with literally the worlds biggest blisters on my feet, had to limp home and get mum to pop them for me (gross I know). Next week I am going away with my dad, stepmum, brother and half brother and sister for a week down on the south coast- which I am really looking forward to 🙂 Unfortunately taking work with me but there we go!

I am sorry that I have nothing that much of interest to share with you – no dramatic stories, no horrible tales; but I hope that for some of you who have been reading for a while, it will be nice to know that there is no more of that at the moment! As of right now, I am just revelling in my freedom and my ability to do what I want Crohns free! I worry about this blog -about boring people, about writing too much or too litte, about posting too often…but I am just going with what feels right- I still CANT BELIEVE how many of you out there read these warbles, and it truly warms my heart! Thank you, thank you, and thank you a few times more. You will never know how lovely it is 🙂

H x

So another term draws to a close…

…but not before having a last minute essay stress!
I am busily typing away to you (going to be a quickie im afraid – cheeeeeky 😉 ) because I am in the middle of trying to do a 2000 word essay for Friday, and lets just say its not going to plan! bleughh!

My tap shows last week went FAB, they were so much fun and such a confidence boost and a bit of a moral victory over my Crohns. For months I thought that my operation would stop me going to it, PAH, as if. Screw you Crohnies, I got up there and tapped my heart out and enjoyed every minute! (bit of a lie, first show I thought I was going to be sick I was so scared…the glamour of showbiz haha!)
I missed the last show on the Sunday to drive back home and go to my granddads 80th, which was really good fun 🙂 Not quite the afterparty I had in mind, but something probably more memorable! I love family things like that, although gutted it overlapped with Pure Dance; what were the chances?!

ANYWAYS back now! Just trying to get this essay done (as I have said 5 times already … apologies it really has been a long day!) and just wrote a blog post on my archaeology blog about the work I was doing- the title is ” do computer models allow us to experience the past as it really was? Discuss with examples’ and although its really irrelevant to what I normally post on here, just wanted to copy a paragraph across because I was pretty proud of it! :

“… That’s pretty weird right? Someone who is spending three years of their life to study the past and try to understand peoples lives and how they thought and acted, and yet I don’t want better simulations? The reason is simple – a computer isn’t a person. And I don’t think it ever should be. A computer cant think, or feel, or have emotions; it cant remember memories attached to certain places in a town or house, it cant feel wind or heat or appreciate the rush of happiness you get when you walk out of a cool house into a hot courtyard towards a fountain…its a machine. No matter how brilliant these models can become (and they are already pretty damn amazing!) the next step leans towards AI, and computers beginning to understand these things and I am not sure I think that’s good. THey are clever enough; are we really so vain as to think we can condense the essence of being human, that human spirit, into a machine? Into a code? I don’t think that machines will ever truly allow us to experience the past as it really was because; well, it was experienced by people, interacting with other people, caring for yet more people. And a computer just cant show us all that. …”

I KNOW. Deep, huh? 😉 But, I was pleased it showed my feeling well, I think – although needless to say I haven’t been able to put that into my essay, I don’t think its the correct style of writing! But I am trying hard to adapt it to fit into what I want it to be, and to make my point just as strongly but in a more academic way.

Chronies is fine, the scar is merrily just healing away (woo) although starting to get some serious grumbling noises again, but I am just staunchly in denial. Humpff. I am having a blood test and seeing the specialist after the Easter holidays (in a month) to check on all my levels. SO I guess I would see things then. But its not swollen or sore anymore, which I am taking as a good thing!
Hope you are all having a good week, and nobody is too stressed!

Big Smiles,

H x

The bad day that started it all

“I know my texts are annoying you because you can’t do anything

to help me right now and I’m not texting to make you worry

or feel bad, but I worry my friends are going to get fed up with me

and since you are stuck with me its easier to text you. I am feeling so down

about this all, I’m so sick of being ill, I don’t remember the last day I felt

normal. I have a ball tonight and my stomach is so sore and bloated I’m

not sure I will even fit in my dress or go. I’m sat in the library frantically

trying to work because I’m behind on an assignment and its all I can do

not to cry and I don’t even know why. I’m so sad today and nothings going right

and I cant do my work and the medicine isn’t working and its making me

put on lots of weight and I’m still getting cramps from Friday

😦 x

This was, letter for letter, the rather miserable text I sent to my parents yesterday morning – its pretty self explanatory. I was having a bad day, and not a physically bad one but emotionally – having Crohn’s is like many diseases, half the battle I have found is the emotional and psychological battles that come along with it, and these are the ones I am only just realising I have to fight too.  It sounds very over dramatic, and I want to stress it was the accumulation of a bad week health wise which just all got on top of me – but it happens, honestly, it was a horrible day where I felt like why me? I don’t drink (much – I mean, I am a student 😉 ) I have never ever smoked, or done drugs, I am so sensible with my body, am reasonably healthy and in okay shape, so why should this all happen to me?

I have reached the point where I was so far into the treatment (in my eyes) that I had lost the initial enthusiasm about the medicines working, but not far enough to see an end point, or at least a point where it would stop interfering with my life in every aspect as it often does now. It was during the dark depths of yesterday afternoon that I realised, I cant be alone. What I needed is someone or some people to talk to who understood what I meant, I love my friends but I don’t want them to get sick of my moaning and groaning, especially when they don’t really understand the types of pains and emotional stresses I am under – I try to act as normal and shield them from stuff, so that they don’t feel the need to treat me differently. Then searching online I found some tips and advice, and after a day of feeling awful today I am on the up again.

This blog is a way for me to share with you  my journeys and ups and downs, and hopefully to contact others on a similar journey. As well as anything else, this blog is for others to read and to understand more about the honest implications of having, and living with, Crohns.

H x